Optic Neuritis getting worse with IVSM?
 

Talk about irony. The reason I was put on the steroids right away was because the ON in my left eye. I am on day 4 of 5 of the IVSM.

I swear I woke up this morning and now both eyes are acting up. Before it was only my left eye.

Oh the nurse finally came out yesterday and moved the IV after my vein blew and my hand is still swollen from where it filled with IVSM.

Side effects so far: mood swings, nausea, hot flashes, cold sweats, indigestion, the shakes, fatigue, heartburn, lack of sleep, and a over powering urge to beat the crap out of somebody. Oh let's not forget the blood sugar yo yo that's making me nuts. lethargic and depressed.

ON has worsened, I have seen no change in the numbness and my balance is getting worse too. I think it is safe to say I don't believe the IVSM is working. But I am prescribed one more day and I will finish it.

I can't speak to the other eye, but I'm going to guess it's a side effect of the steroids or stress. Bi-lateral ON is actually not common in MS and I think it would be unusual for another attack to happen WHILE you're on steroids.

As far as ON, it usually hits a curve and recovery happens in reverse, the way it came. I don't know that steroids will halt the progression of sx once it begins but it should help your vision recover faster and avert further damage because of the reduction in inflammation. The only way to really chart progress once ON begins is by follow-up examination. The visual field tests will usually show improvement long before you yourself will see it.

I'm sorry you're having such a rough time of it, Legzz. I'm taking Prednisone right now but it's the oral kind......IV steroids and I don't get along either. Plus, I'm concerned about damage to my bones (osteoperosis) from too much steroid use.

I hope you can finish this dose out and not have to subject yourself to this again anytime soon. It sux to feel bad already and have the remedy make you feel worse. :( Hope you feel better soon.

I don't much about that stuff. Okay, nothing. I hope it kicks in soon before you kick someone. Feel better soon.:hug:

When I had optic neuritis the first time (August 2006, left eye) my good eye started to have problems. My ophthalmologist told me that it was trying to compensate for the ON eye and it was tired.

Have you been reading a lot? I know I tried to read a lot, in the dark, on my computer (dim light made things feel better) and that reading on my computer and dim light was making the good eye wear itself out.

There are computer programs that you can use that will "read" text on a computer out loud to you. On a Windows computer, it's in the Accessibility folder. I'm not sure where it's located on a Mac, but I think Macintosh computers have better voices.

I bought a program for my Windows computers (didnt have a Mac in 2006) that I still use to read even tho my eyes are better now. It's called TextAloud. I bought the full version of the program since the full version had better sounding voices on it.

I'm hoping to buy a Kindle 2 later this spring. (already have a Kindle1) The Kindle is a portable e-book. The Kindle2 has a nice text-to-speech feature on it. (apparently doesnt work for every e-book because the Author's Guild is being a pain in the butt about allowing their books to be read out loud by a Kindle)

If I get a Kindle2, and my eyes go fubar again (they seem to go bad every spring/summer) I'll be able to use it as a portable audio reader and not be stuck using my computer to read to me...and it'll be easier to find interesting books.

I hope your eyes get better soon. Optic neuritis sucks more than numbness does. (well, maybe they both suck equally) Optic neuritis is a lot more depressing, at least to me. Since my hobbies (reading, knitting and crocheting) are easier to do when you can see. (I can crochet and knit blindfolded, but I like to look at the yarn colors)

I never did do any steroids for any of the ON exacerbations that I've had. I just let my eyes recover very slowly. (took about a year for the first case of ON, the others all seemed to resolve within 2 or 3 months or less) I'm saving up the steroids for another bout of vertigo or something worse than that.

Good luck with the steroids. Hopefully they'll start to help.

I'm SO sorry to hear that you are having such a tough time of it lately, Legz. I really hope that things start improving for you soon and I am keeping you in my thoughts and prayers.:hug:

I have had no experience with IVSM so I can't comment on that unfortunately but I would definitely speak to your Doctor and see what he/she thinks you should do.

I'm sorry that I can't help you more. Just know that I care about you and if you need to talk, I am here for you as I DO understand some of the side effects that you are having!!!:hug:

Take care of yourself and you are in my thoughts. Please keep us updated when you can!!

You know Erin you may be right. I was knitting on the loom earlier. I was trying to finish up a baby blanket for a friend of mine, which I gave up on when my other eye starting messing up. I am so bored that I actually called my mom and asked her to bring my DD and come spend the night. Fiance is pulling a 24 hour shift. One down side to living 50 miles away from all of my friends and family. So she is on her way.

Oh yeah so I can't really eat anything b/c of the heartburn and have been on a fruit smoothie and yogurt and water diet for 3 days. And I have still gained 8 lbs in 4 days. Told mom to bring me some books on cd to listen to. Waiting for her to get here so she can help bag my arm so I can take a shower.

I think next weekend after the steroids have worn off and the MRI's are over that I am going to kidnap the fiance and go to the winery and just take a couple days off.

Sorry you are feeling worse. sending (((hugs)))

((((((Legz)))))) The nurses at the hospital told me that IVSM doesn't usually seem like it's working until you have been off of it for a week or two. I found that to be true.....so hang in there..:hug:

You're loom knitting?? I've tried that. Goes too slowly for me. Looks cool, but too slow. I crochet more than I knit, hand knitting goes a bit faster than loom knitting for me, but still too slow for me. I crochet so much more quickly. I still love to play with yarn and the hooks and the pointy sticks.

I just finished my first knitted wearable (other than scarves) I knitted two wrist warmers. I'm surprised I actually was able to finish BOTH of the wrist warmers. (basically it's a knitted tube, open on both ends, that fits over my wrist and has a thumb hole for my thumb to stick out of.)

What I basically did was knit it flat, like knitting a scarf, and then when I decided it was long enough, I folded it into the tube shape and sewed it up, leaving a hole for the thumb.

Too bad I dont like wearing the left handed one. My left hand has had some weird numbness since just before Xmas, and I dont like the way the wrist warmer feels on the ball of my thumb.

I had a 5 day course of this when I first got diagnosed. It made me feel pretty energetic the first day, like I drank a case of Red Bull, but not the rest. It made me feel like I was weak and sore. I was only on the drip five days, but it took two weeks for the steroids to really reduce the symptoms -- especially my vision issues. The biggest issue for me was the emotional mess it made me. The nurse warned me that for some it was like PMS in a bag.

I hope you start feeling better about it Leggz, give it time :hug:

Erin I got my Kindle2 in February. I order it in December but had to wait until it was released. I love it that it can read to you. I take short breaks and let it do the talking. Right now I'm reading The Shack - awesome book. ;)

Ha HA PMS in a bag. Cute. Actually the depression part sucks for me, but I was a little better prepared for all of it this time. Last time I had no idea what to expect and when my body and mind began reacting I was horrified.

Well, mom came and spent the night and did my dishes and vacuumed for me. She cleans when she is nervous. Works for me. that was very sweet of her. I finished the last drip this morning as soon as I woke up so i could take the stupid thing out of my arm which ihaad hidden under a big ace bandage all night to keep my DD from seeing it.

Now it's over and my face is on fire. I was able to stand under the cold shower for about 30 minutes this morning without having to wear a bag on my hand or arm so that was nice. I am hoping the withdrawal thing doesn't hit me this time like it did last time, but considering they didn't even prescribe me a dosepack to wean me off I am sure I will back on the phone with the neuro before days end.

I just made 32 oz of more smoothie stuff that is in the freezer and I have started the water flushing.

I have the Kindle 1, it doesnt have the text-to-speech capability. :mad:

My dad got his Kindle 2 in february too, he doesnt use the text-to-speech, but he's having fun with the K2 anyways. He took the change from his piggy bank to the grocery store and used the Coinstar machine to convert the change into an Amazon.com gift card. He's now got $100 and some change to buy Kindle books with.

I love my Kindle 1, but I'm hoping that I can get the K2 for my birthday. The last two years I've had problems with optic neuritis or just weird vision problems from the heat every spring, so I really want that text-to-speech.

Right now I'm reading a Star Trek novel. The Last Round Up. It seems to be taking place after Star Trek: The Undiscovered Country movie. It's pretty good so far, and it's probably the only book other than The Kindle Cookbook that I hadnt read yet before getting a Kindle. (The Kindle Cookbook is a book that a Kindle user wrote that explains all the little tricks and tips to use the Kindle 1...think they have an updated version for the K2 now)

I hope I get the K2 before I get another case of optic neuritis smacking me in the eye. I dont want to have to sit around and wait for it, or borrow my dad's K2 if my eye goes fubar again. I've had some blurry vision off and on for the past month or so, and some occasional eye pain (nowhere near what it was the first time I had ON) I'm scared that my eye will go fubar. I think that's my biggest fear from the MS other than paralysis. I'm scared I'll eventually lose my vision.

At least we live in a time where we've got all sorts of nifty gadgets like Kindles and computers and audio books on CD to use to read books. I'd probably go nuts if I cant read. (or listen to a book on CD)

I don't think steroids have the effect of "averting further damage", bearygood, at least when it comes to ON:

"There is no definitive evidence that treatment with steroids produces a more complete recovery than that which would have happened without treatment."

".... there may be inflammation and/or demyelination of the optic nerve that occurs without affecting visual function so that the person is not aware of any changes. In these subclinical cases, visual evoked potential (VEP) testing is still able to demonstrate evidence of lesions or damaged areas along the optic pathways. It is for this reason that VEPs are often used as part of the diagnostic workup; a positive finding can provide evidence of a second demyelinating event even in the absence of visual symptoms."

http://www.nationalmssociety.org/abo...tis/index.aspx

Also, relapses only very rarely result in permanent damage anyway:

http://mrbrunches.lefora.com/2008/09...sult-in/page1/

Beary, I just had a VEP test last week, as they want a "baseline" for damage going forward. They could see the damaged nerve just by looking with the drops and magnifying equipment, but apparently the VEP will give them a better "measure" of nerve damage.

I am going for a visual field test in a few weeks too (had one in Dec as well) but it was a digital one that apparently doesn't tell them as much as the older manual type. I don't really know what that means, but they wouldn't accept the results from my Optomotrist, and I have to have another. :confused: From what I gathered though, that test determines if we have loss in peripheral vision, doesn't it? That's what it seemed to indicate by having to hit the button when I spotted the bright lights in my vision. :confused:

Leggz, I have no idea why the steroids "appear" to have stirred up your ON, but I'm wondering if it was just coincidence. Maybe that was the next thing that was going to pop up anyway, and the timing just coincided.

I'm glad you are done the steroids, and hope you get to feeling better in the next week or two. :hug:

Cherie

Hi Leggzy,

I'm sorry for the IVSM problems. When I took it, I got worse (both times). I won't take it again unless I'm really bad. (I hate the taper with a vengeance.)

I hope you'll get past the ON soon. :hug:

Yes, this is exactly my understanding with the caveat that if caught early enough steroids can be helpful in averting damage by reducing inflammation more quickly but the key is the health of the optic nerve. I didn't do steroids for exactly the reason you cited, coupled with the fact that I'd already hit the curve by the time I was dxed and my optic nerve was healthy, exhibiting no pallor. My NO still wanted me to do steroids so that I'd recover more quickly but didn't push it because my optic nerve looked good.

I've never had a VEP. My neuro-op ordered an MRI of the optics as soon as she dxed me with ON and did a follow-up a year later. She also took a picture using OCT. I'll have another follow-up MRI next month to track the progress and also have my first follow-up OCT.

I will ask my neuro-op for more clarification on whether there are ever cases where steroids have benefits beyond speeding recovery when I see her next month and report back. Perhaps I misunderstood.

Yes, the VF tests show if and where in the perhiphery there is vision loss. Still stumped by what the manual test is and look forward to finding out! :)

I first had an appointment with my optometrist, who believed that I was probably in an ON attack, or perhaps more likely, just had Uhthoff's from an old attack. I told her I didn't see the point in knowning, as I would have no intention of doing steroids anyway. She said "well, maybe there is something else they can give you now . . . and she referred me to a neuro-opthamologist anyway.

So I met with the N-O, and we talked about my history with ON (which dates back to 2004). She picked up the note from the optometrist, which had about 2 lines on it, and she said "I hear you are not interested in steroids?" :ROTFLMAO: I thought that was soooo... funny, because the optometrist said so little on that note, but made the point of tattling on me about not wanting steroids. :p

I told her that it was my understanding that steroids could not improve the recovery, so I didn't see the point in doing them (given the side-effects and risks). She shocked me by agreeing with me. She said that she would never recommend steroids to a patient UNLESS the person was completely blind and had the potential to "hopefully" realize some recovery from that. Even then, she said she'd leave this to the patient to decide because steroids bring their own set of problems.

I am going to ask about that visual field test, and how it may be different from what I already had. I got the call from the place where I have to go, and I did mention I already had one in Dec, but they said their's was more extensive. I can't imagine that . . . I had a heck of time with the first one. I was so exhausted, I came home and slept for 4 hours!!

Cherie

You know, it's possible that we're saying the same thing in a different way... That kind of vision loss would be more in keeping with damage to the actual nerve. But I will ask.

More than your finger was tired from the VF test? :ROTFLMAO:

When I had my visual field tests at various ophthalmologist appointments (and the one visit to a neuro-ophtho) I usually start to fall asleep during the tests.

It's soooooo boring!!

I try to warn the techs that are administering the tests that I tend to fall asleep during them. (I also fall asleep sitting at my computer reading all the time. I dont sleep at night apparently)

The OCT's are always fun tho...the red blinky lights are kind of pretty. My ophtho got his OCT machine last year (he didnt have one the first time I saw him for the ON) and I'm really kind of intrigued by that machine. I like being able to see pictures of my optic nerve. (they usually print one off for me)

I need to check and see when I see the ophthalmologist again, I need to get a refill for the allergy eye drops he gives me. (Pataday drops) We're going into allergy season, and I really dont want a repeat of last spring when my eyes got so dry that I went thru a couple of bottles of eye drops in a couple of days. That was really an uncomfortable feeling, having my eyes get so dry that it made my vision seem really weird.

It just sucks that the Pataday drops are so freaking expensive. I think it's like $80 (with insurance) just for 1.5mL of Pataday. The samples he gave me a Rx for last year (had to get them from the pharmacy with a coupon that made them "free". Had to pay for the samples and send the coupon in with the receipt to get the money back) those were just .5mL and they were nearly $30 for the two bottles!

Leggz I hope you're feeling somewhat better today. :hug: When I was on day my face felt so hot I got a stool and actually put my head in the freezer a few minutes to cool it off.

I don't know what I'd do without my Kindle2 Erin. I never enjoyed something so techy so much in my life. It's awesome you can order a book anytime, anywhere. Today I'm going to New York City to Jersey Boys on Broadway and will be reading on the bus. :D

interesting Legz, i just got off an ivsm treatment about ten days ago then tapered down and my right eye which is ok has been giving me nothing but trouble now and chucky my headaches is back with a vengance

I hope you get to feeling better real soon:hug:

I know what you mean. My parents want to go to the zoo. (I dont really want to go) and I'm considering taking my Kindle with me so that when I get tired of walking around, I can sit down and rest and read my Kindle.

I better go, my mom wants to go out for breakfast. They just woke me up to go. Good thing I charged my Kindle last night.